Tuesday, March 26, 2013

NOTE:This will be my last blog post until after we move to a new state.

I hope to be back online by mid-May. Keep checking back, please! I promise to be back searching for information to help you better manage your chronic pain issues as soon as I am able. Until then, please keep me in your thoughts & prayers.

Time for Tuesday-Newsday! The Featured Blog Post is,“5 Tough Choices You Face When Chronically Ill or in Pain,” by Toni Bernhard.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING: My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. As is the case with any health info, ALWAYS get your doctor's opinion first!

Saturday, March 23, 2013

My husband has gotten a job promotion to another state - so we are moving! I've never lived anywhere else but here, and it's going to be a huge change for me, particularly with rebuilding my medical treatment team and maintaining my daily management of pain. Frankly, I'm scared. Sure it will be a new adventure, but it will be "without a net" - no family, only a couple of peripheral acquaintances, no support system, no doctors lined up (yet), and a community swimming pool which I pray will work for me. It's overwhelming. However, I'm trying to pull myself together and push forward into the unknown with an open mind and willing heart. It feels like such a thorny situation, but I keep reminding myself that I can still bloom in a different climate. I may be trading my beloved dahlias for desert gardening, but beauty can be found in many forms.

A mini cactus with many blooms in my birdbath.

Time is racing and I'm not going to be able to keep up the blog while we are packing and transitioning. So after Tuesday-Newsday this coming week, I'll be on hiatus until mid-May - unless there's a really big issue about chronic pain in the news, in which case I'll do my best to get that information posted here on the blog if I can.Hopefully, our move will go smoothly and I'll be back as soon as I can. Say a prayer for me, and I pray in return that your pain will be eased and well-managed.Blessings to all!~ Shannon

Tuesday, March 19, 2013

Time for Tuesday-Newsday! The Featured Blog Post this week is,"Being chronically ill or in pain can feel like a full-time job," by Toni Bernhard.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING: My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. As is the case with any health info, ALWAYS get your doctor's opinion first!

note from Shannon: "They think they are doing a good thing with this bill. But to block access to any drug could prevent patients who cannot tolerate side effects or don’t have optimal results from the tamper-proof rx from from getting the relief they need and deserve."

There is an effort underway in many states to pass legislation to ensure that this does not happen. It will require you and your physician to be notified in order to substitute your biologic for a biosimilar. We believe we have the right know what medications we are taking. Do you live in one of these states and take a biologic? Do you want to help us ensure we know what drugs we are taking? If so, contact Allen Todd at: atodd@ghlf.org for info on how you can help. Read more about the legislation HERE.

Tuesday, March 12, 2013

Time for Tuesday-Newsday! The Featured Blog Post this week is,“The Lights Are On But No One's Home - When the world gets to be too much, Sandi pulls in the welcome mat and hides behind her front door,” by Sandi at CreakyJoints.org

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING: My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. As is the case with any health info, ALWAYS get your doctor's opinion first!

“Critics worry that patients will be misdiagnosed as mentally ill and won't get treatment, affecting mostly those with chronic and difficult to diagnose neurological disorders and multi-system diseases like ME/CFS, ones that are poorly understood and can take years to get medical answers...”

Saturday, March 9, 2013

One year ago, I had an experience which was enlightening and empowering. My Traveling Red Dress moment was truly special. I can't believe a year has passed, and it has reminded me how much I am inspired by the project. I've decided to repost, with some minor editing, the blog post about my experience with the Traveling Red Dress. I know this piece has a lot of links to other web pages, but I promise that all of them are well-worth reading. I hope you will take the time to learn all about the project, enjoy the fantastic & courageous red dress photos, and I hope many of you will be similarly inspired to join in along with your sisters, daughters, mothers, aunts, friends - and everyone else you know who needs a red dress moment!

==<>====<>====<>====<>====<>====<>==

Unveiling My ‘Traveling Red Dress’ Experience

What exactly is the Traveling Red Dress? It's a special project for women who going through a life-changing event, chronic health issue, or who need a boost of spirit in a sort of Sisterhood of Traveling Pants sort of way. Red dresses are worn and then sent on to next woman who asks for one and photographers donate their time to take photos to document our ‘Red Dress moments’. Like me, those involved have been dealing with major issues who just need to stop and acknowledge their struggles and realize that they are special, unique, and “worth it”.

“...sometimes we all need a little red dress to remind us (that we are special and vivid and dynamic).. So today, think about what it is you need and were too embarrassed to ask for...

Find your red dress. And wear the hell out of it.”

~ Jenny Lawson

Red Dress’ers have included women recovering from cancer, young girls dealing with bullying, widows adjusting to a new life, daughters caring for elderly parents, those in financial peril, mothers with sick kids, and many more with all kinds of personal stories. The woman who started the Traveling Red Dress movement, Jenny Lawson, lives with severe depression and anxiety. Her two fantastic original blog posts (you absolutely have to read them: post #1 and post #2) blossomed into something far more than she expected. Said Jenny: “There’s something fairly magical about the whole project. It started as one simply un-simple dress and grew into a web of women sending other women shining red dresses as a way to say, ‘I see you. I recognize where you are and what you’ve done.’ It gives me such faith in humanity.” The Traveling Red Dress grew into a Facebook community of women telling their stories of struggle, courage & triumph, connecting with each other across the country (and now the globe) by sending around the red dresses, and sharing their amazing photos. You can visit the page here: Traveling Red Dress Facebook page.In my situation, living with a chronic degenerative illness is tough. My day revolves entirely around it. I pretty much live in a bathrobe and sweats, I do my physical therapy every day, and my pain is 24/7. Even sitting for 15 minutes is painful. When I read Jenny’s message about the Traveling Red Dress, it made me stop and think. I couldn’t remember the last time I put on makeup, did my hair and really tried to look my best. I haven’t felt beautiful in a really long time, and it made me realize I was letting my daily struggle beat down the spark inside me and squash my self-esteem.

In my first blog post about the Traveling Red Dress, I talk about finding out about the project and I detail how I found my own red dress at a local thrift store for $10. My husband called an old friend who is a professional photographer, and he agreed to do my photo shoot. On the day we were scheduled to shoot, the weather changed and became very cold and windy. We started at Stanford University for all the lovely arches and backgrounds, but I was absolutely freezing! When I was helped up from lying in the grass, I was shaking so hard I couldn’t walk on my own. I had to lean on my husband while he assisted me to my wheelchair. In between each location we shot at, my mom and husband tried to warm me up by wrapping me in a blanket and two coats while I drove my wheelchair.

It was a true test of stamina and endurance for me, but I began to feel something beyond the physical. I really felt beautiful! I could see a lot of people, mostly tourists, watching me and it made me feel special. I was the center of attention and I felt like I was actually worthy of it. I wasn't just a 'sick chick' slumped in a recliner wearing an old bathrobe and fuzzy slippers. I discovered I am much more than that. It was truly empowering!

After we finished shooting the images with the rose & camellia petals scattered on the grass, they had to be removed according to Stanford’s rules. As I sat bundled in my wheelchair and the others cleaned up the petals, a strange woman came up to my husband and asked, “Are you doing some kind of ritual?”

He said no and we all laughed. But in a way, I think she was actually right. This was a ritual to prove to me that I am *not* rendered completely helpless, unappealing, and devoid of sparkle by my painfulchronic illness - unless I allow it do that! I am much more, and I need to remember to let myself shine through and believe I am worth it!

I have to give major thanks to my photographer, Hagop of Hagop’s Photographyin Los Altos, California. He is a true talent with 30 years in the business. He was patient and understanding, and worked hard to achieve the vision I wanted for my photos. You could do no better than hire him to shoot your wedding or family portraits. He is the best!

My hair stylist,Dontay, got caught up in the spirit of the Red Dress and styled my hair for free. He’s a fantastic stylist - thanks so much!

I also want to thank Carol Angel atRedwood City Floristfor helping me get all the rose petals, and my friend Dale for adding in extra camellia petals.

Thanks to friend Meg for making that gorgeous necklace for me, with real Carnelians! To contact her about having jewelry made for you, send an email tomeggieprice@gmail.com

Thursday, March 7, 2013

The Centers for Disease Control (CDC) has issued a new alertthis week for patients who received contaminated steroid shots produced by the New England Compounding Center.

Because many of these new cases are among patients with minimal symptoms, CDC is re-emphasizing the recommendation for clinicians to remain vigilant for fungal infections, especially in patients with mild or even baseline symptoms, and consider evaluation with magnetic resonance imaging (MRI) if clinically warranted.

According to this article: “We are seeing some patients with very long incubation periods,” said Dr. Tom Chiller, associate director for epidemiological science in the CDC’s division of foodborne, waterborne and environmental diseases. “We expect to see people getting infections months after their injections.”

The danger of not detecting the infections is they only will get worse, Chiller said. “Any untreated infection can sit there and smolder and spread,” he said, noting it can move beyond soft tissue to bone and the central nervous system, with devastating, even deadly, effects.

CDC officials want health workers to continue to monitor patients, particularly those whose have pain that is worse or different from the initial symptoms. But even patients who previously tested negative for infections and those with no apparent symptoms are at risk.

These infections may be unrecognized because some patients have not continued to receive close clinical follow-up or because they have not recognized symptoms suggestive of a localized infection.

If I was a patient involved in this outbreak, I would contact my doctor as soon as possible to discuss my current health and treatment, in order to determine if more needs to be done on my behalf. Meningitis can be deadly and it is vitally important for outbreak patients to be extremely watchful for any symptoms and consult with their doctors as needed.

For all the details about the change in treatment guidelines and outbreak statistics, follow these links:

Tuesday, March 5, 2013

Time for Tuesday-Newsday! The Featured Blog Post this week is, “Decisions, Decisions” about planning and pacing when you live with chronic pain, from the PainSupportUK newsletter by Jan Sadler.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING: My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. As is the case with any health info, ALWAYS get your doctor's opinion first!

"A good Garden may have some Weeds."

I like to think of Life as a Garden... with the blossoming flowers as our souls fed by the happiness we cultivate.

Chronic Pain is like a persistent weed that threatens to take over our garden when we have chronic pain/illness.

Although we may not be able to stop the invasion of weeds, we can find ways lessen their impact in our lives: to remove the weeds we can, to obstruct their growth by treating them, or to step over them & choose instead to focus on 'stopping to smell the roses'.

This blog is about living a joyful life despite chronic pain: by being educated on your pain condition, becoming a smart patient, finding inspiration, and then opening yourself up & finding creative ways to experience life.

About Me

I am believed to have Ehlers Danlos Syndrome III - Hypermobility Type, which is a painful genetic disease that affects collagen and connective tissues... but there are some doctors who say I likely have a mutation of EDS or another connective tissue disorder.
I love my husband and my cats!